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Tuesday, July 31, 2007

If Chief Justice Roberts doesn't already know former Congressman Tony Coelho (portrait at right), now would be a good time to get acquainted. Coelho was one of the primary authors of the Americans With Disabilities Act. He's now the chairman of the board at the Epilepsy Foundation. And he's one of the best-known people with epilepsy in public life today.

Coelho's story was frequently told during his time in Congress: he had studied for the priesthood, but a medical exam found that he had epilepsy (he didn't know that before, apparently) and that fact barred him from taking his vows. When the diagnosis was reported to the state, he also lost his driver's license and health insurance, both denials standard at the time. He went to work for a Congressman, and later ran for the same seat and won. He rose to the position of House Majority Whip during his six terms in office.

But what if you have a seizure at the White House? he was asked during his first campaign. His response: "Well, in the 13 years I have served in Washington I knew a lot of people who went to the White House and had fits. At least I’d have an excuse." (My response: The White House probably has soft chairs and couches and a first aid kit handy, so what's the problem?)

There's an anecdote in Anne Fadiman's The Spirit Catches You and You Fall Down about Coelho (the Hmong child with epilepsy at the center of the book's story happens to live in Coelho's California district):

Coelho is a popular figure among the Hmong, and a few years ago, some local Hmong men were sufficiently concerned when they learned he suffered from qaug dab peg [the Hmong term for epilepsy] that they volunteered the services of a shaman, a txiv neeb, to perform a ceremony that would retrieve Coelho's errant soul. The Hmong leader to whom they made this proposition politely discouraged them, suspecting that Coelho, who is a Catholic of Portuguese desccent, might not appreciate having chickens, and maybe a pig as well, sacrificed on his behalf. (20-21)

Fadiman goes on to note that epilepsy is considered an especially spiritual condition in Hmong culture, so "what was considered a disqualifying impairment by Coelho's church might have been seen by the Hmong as a sign that he was particularly fit for divine office. Hmong epileptics often become shamans." (21)

Monday, July 30, 2007

Memoirist and poet Kenny Fries had an op-ed piece (free registration may be required) in the Washington Post over the weekend, about the recent technical disqualification of runner Oscar Pistorius in a 400m race (he crossed outside his lane, in wet conditions that caused his carbon-fiber "Cheetahs" to slip a bit and slow his time). The applicable governing body has banned any devices involving wheels or springs--but Pistorius's prosthetics involve neither wheels nor springs (um, or maybe that's not quite so*). Oscar Pistorius isn't a great runner because of his Cheetahs; if that were the case, everyone with Cheetahs would be a great runner. So the questions of advantage/disadvantage, technological supports, and athletic achievement are still unfolding. It's been an interesting case to watch, with some parallels to previous stories like Casey Martin's.

As I've noted here before, NHRA drag racing has a very different history with amputee racers and customized prosthetics. Maybe it's because of the sport's literally explosive nature, or because it's already a technology-centered competition. The legendary Don Garlits lost part of his foot in a 1970 track explosion, and had a permanent limp thereafter; he was still racing decades later. Far from putting Garlits out of the running, the incident spurred him to pioneer major safety changes in dragster design. Reggie Showers (pictured at right, holding a prosthetic leg), a drag-bike racer who was a double below-the-knee amputee after an electrocution accident in his teens, wore specialized prosthetics on race day that made him five inches shorter, in an event where a more compact profile is generally considered an advantage. That advantage was never ruled "unfair," and Showers competed for several seasons without controversy.

*In comments, Sara says the whole Cheetah functions as a spring. So corrected! I wonder if the rules mean that kind of spring action, or the actual boing-boing curly springs I was picturing. Oh, yes, I really was picturing Wile E. Coyote with his spring shoes, bouncing across canyons (see left)--which, as far as I know, nobody's tried to use in track competitions anyway. Good thing the legs are called "Cheetahs" instead of "Coyotes," I guess...

Sunday, July 29, 2007

Retired Waif, who hosted the Carnival earlier this month, has a new baby. Go, admire the pinkness of fresh life. David, who hosted the Carnival in November and is scheduled to host it again next month, has just returned from a whirlwind trip in Costa Rica--he has a slideshow (in fun retro Viewmaster format--hey, isn't David too young for Viewmaster nostalgia??), in case you're needing a vicarious vacation. And Tokah, who hosted the Carnival in April, is recently wed, and she's sharing photos of the party and video of the dancing. I hereby throw some virtual rice (or popcorn, or birdseed, or whatever) for the happy pair.

On a more worrisome note, Kathryn, who hosted the Carnival at Ryn Tales back in May, has had a rough weekend in the hospital with her daughter Ellie--meningitis has been mentioned as a possibility, which is always scary, but even more complicated for a kid with a shunt. Maybe drop them a note of encouragement and support if you get a chance.

Eunice Tietjens, born on this date in 1884 (and pictured at right, in a head-and-shoulders photo), was a Chicago-based poet and associate editor of the influential magazine Poetry. She also traveled widely, in China, Africa, and the South Pacific. For sixteen months during World War I, she went to be a foreign correspondent in France, for the Chicago Daily News. The experience left her horrified; in her horror, she wrote the following poem:

Brains like paint spilled on a wall,And flesh that has no form at all;

And after nights when souls have goneThe lovely, heedless, heartless dawn.You who have no eyes to seeYou were spared what shaketh me.

Paris, 1918

Tietjens was surely underestimating the way such horrors might be perceived without visual inputs--but it's still a poem that conveys something of the post-WWI sense of appalled weariness and rethinking assumptions. She's been shaken into different thinking about impairment... and about sunrises, too. (Another poem of interest is her "From a Hospital Bed," which begins with the evocative lines, "This is a house of many-fingered pain/Swift fingers, pitiless, that probe and press:/A sullen house, where torture is and stress,/ And where drugged nightmare dreams grow real again.")

Researchers intend to make a replica of the “Cairo toe”, a bending leather and wood attachment that they believe could be the world’s earliest practical prosthetic. They are seeking volunteers, who are missing big toes on their right feet, to test their theory that the fake toe helped its original user to walk.

(So it has to be the right foot? Really? They can't make a mirror-image replica?)

By the way, the toe's original user was a woman in her fifties or sixties--her mummy was dated to between 1069BC and 664BC--so I'm guessing it wasn't a prosthetic to address a battle injury, as many historical prosthetics have been. And maybe the articulated "fake toe" wasn't made primarily to help her walk, but was instead a cosmetic appliance, or helped her do work involving a treadle (if that's not an anachronism) or had some other purpose for her--why assume walking would be the only real use for a prosthesis? The carefully carved toenail wouldn't be there if the device was only for balance and locomotion.

The previous record holder for earliest known prosthesis was the "Capua leg," a copper-and-wood device from about 300 BC. I was in Capua a few weeks ago--but the leg wasn't, it was destroyed in bombing during World War II, while it resided at the Royal College of Surgeons in London. And Herodotus mentions a Persian soldier having a wooden foot after a rather grisly escape in the 5th century BC.

[Image above: The Cairo Toe, a dark wooden prosthesis that looks a bit like a big toe and the ball joint behind it, attached to a skeletal foot, with a woven strap nearby. The photo is credited to the University of Manchester, and appeared in the Telegraph article online.]

Friday, July 27, 2007

Zephyr at Arthritic Young Thing has assembled a terrific collection of recent posts on the subject of Sex and Disability. She writes, "I wanted to hear about the sex lives of other crips, how sex and disability intertwine, and what issues crop up around sexuality and disability." And bloggers responded to this call, with posts on the personal and the political, the frustrating and the liberating. (The words lingerie and vibrator will appear--among other vocabulary--adjust your filters, co-workers, or housemates accordingly.) You know that Neil Marcus line about disability being "an ingenious way to live"? Well, that applies to all aspects of life, and this abundant edition of the Carnival makes that crystal clear.

Next edition will be hosted by Andrea at Andrea's Buzzing About on August 9. She's set the theme "On Holiday," which seems most appropriate for late summer. So, send her a link instead of a postcard, at the blogcarnival.com form, or in comments here, there--we'll find you! Thanks to all the hosts, bloggers, contributors and readers for making the Disability Blog Carnival the ever-changing, ever-thrilling event it has become.

(I'm now recruiting hosts for September and October. Email me if you're interested. The Carnival's first anniversary is coming up this fall--more soon on that.)

[Image above: A sepia-toned publicity photo of the "Bride O'Brien"--and the groom, btw-- Mr. and Mrs. Patrick O'Brien of Pittsburgh were both known as "giants" in the 1880s, both over seven feet tall, when they wed. Found at the Disability History Museum.]

Saturday, July 21, 2007

On a day when much of the blogging world is reading the last installment of the Harry Potter series, a post about another English Harry:

Music-hall entertainer Harry Relph (shown at left, in a publicity pose), known as "Little Tich," was born on this date 140 years ago, in the present-day London borough of Bromley. He was the sixteenth of his father's children, and was born with six digits on each hand and foot; his short stature would become apparent later. Relph's adult height was four feet, six inches.

As a boy, Harry Relph was a barber's assistant, and began performing locally, dancing and playing a tin whistle. He also did blackface acts, early in his career, but eventually found a more unique performance of his own--dancing with large custom "flaps," or elongated shoes (about 28 inches long). His shoes countered his weight, allowing him to bend full over in any direction without falling; he could also balance on the tips of his flaps, lifting himself to a precarious height.

Relph was hugely popular: his frequent appearances in Paris got him elected to the Academie Francaise, and his act was mentioned in anecdotes about World War I English servicemen and skiing. In addition to his "Big Boots" dance, he also performed in drag, and sang. Because of the timing, nature, and popularity of his act, Relph's Big Boots dance is preserved in silent film--and viewable on YouTube, of course (see below for embedded footage). The word "titch" survives in some places as a colloquial term for a little person, after this Tich.

Friday, July 20, 2007

One of the books I read on vacation was AS Byatt's Sugar and Other Stories (Vintage International 1992), in part because I find there's great luxury in reading a book of short stories one after the other, like eating a whole can of Pringles (without the crumbs). Byatt's a bit chilly and grim for the heart of summer, for the Bay of Naples, but it's a slim volume and it's been on my TBR shelf for a while.

Quite a number of these stories are about women and aging--a theme found elsewhere in Byatt's short stories (see, for example, "A Stone Woman" and "The Pink Ribbon," in Little Black Book of Stories Vintage International 2003). Here, perhaps the most haunting portrayal of aging women's bodies is "In the Air," where we find this description of the main character:

Mrs. Sugden had become a walking barometer. Her hip joints knew when the temperature or the pressure was about to drop. Her sinuses ached was the clouds closed, before the clouds closed. A kind of lightning-conductor ran down her thickened neck into the pads of her shoulders and down her upper arms. I have my health, that's the main thing, she told people[...]. But having one's health didn't mean that one didn't daily notice one's body more, as a nuisance, that was, as an impediment, not as the springing thing it had once been. There were things between it and the outer world, like the horny doors she had observed in childhood on hibernating snails. She didn't see so far or focus so fast. She noticed her hips, on the Common, and had to make a real moral effort to see the hooded crow, or the hovering kestrel. (162)

Mrs. Sugden feels vulnerable in her aging body as she takes daily walks with her dog--she thinks through the various scenarios of a possible (inevitable, she supposes) attack upon her. One day, she walks with a blind woman who has a guide dog, and briefly feels the safety in that companionship, but only briefly. (The blind character, Mrs. Tillotson, explains about the "terrible, very frightening" adjustment period when she gets a new guide dog, and the way she uses routine to manage independently. She chides a character who says he "admires her." Still, her character seems to function mainly as confirmation that Mrs. Sugden's media-hyped fears about a lone woman's safety are justified, whether or not a woman can see the warning signs.)

The taut sense of fear in this story has been noted elsewhere, but it's the detailed description of Mrs. Sugden's physical experience of aging that I found most striking. (This story is also discussed in Jane Campbell, AS Byatt and the Heliotropic Imagination [Wilfrid Laurier University Press 2004]: 95-96. Gotta love Google Books some days.)

Monday, July 16, 2007

Certainly I would like to be able to walk, but if the good fairy of old stories offered me the one gift, the ability to walk would not be the thing I would ask for. More years with my husband than I may normally expect, the ability to write better--a dozen things--would come before it.

Ever heard of this Australian writer? I hadn't, but she was born 105 years ago today. She used a wheelchair from age 6, after surviving polio.

Cottrell's life story reads like some of the adventures and children's tales she would later write: as a little girl on her uncle's sheep farm near Toowoomba, she taught the sheep and working dogs to pull her wheelchair like a chariot. She also learned to shoot a hunting rifle, and swim, and drive a car. At 20 she married, secretly, and traveled with her bookkeeper husband around Australia. In 1928 the Cottrells moved to California, and in 1942 to Florida. Dorothy wrote popular fiction, which funded her travels, and some of her books were made into movies. It is said that she would hop a ride on any ship that would accept her with her chair, and thus made her way around the Caribbean she loved.

Kristina at Autism Vox tagged me--not the blog, but me personally, by name, with that infernal 8-things meme that's making the rounds. I felt a bit guilty about not responding to the several "thinking blogger" taps we got, but figured that we have a blogroll, updated often, and heavily contributing to the carnivals is my way of pointing out new and interesting bloggers that more folks should be reading.

But eight random things about me, huh? Okay then. But be warned, if another meme comes around in a few weeks asking for ten more random things about me, I'm tapped out. Here's what I can tell you:

1. I'm left-handed. My kindergarten teacher tried to switch my handedness (in 1972!), and in first grade I went to a special ed class for penmanship. I'm terrible with shoelaces and my favorite rotary cheese grater, but I still cheered when my daughter turned up a lefty.

2. I skipped second grade and repeated fourth grade. Same me, same school, just different policies.

3. I went to high school and share a surname with an astronaut--we're both P. Richards, and we both finished second in our respective classes. No relation, though. He's walked in space, I get queasy on small boats.

4. I was the sixth generation of my grandmother's family to live in the house where I grew up, built by my great-great-greats in the 1850s. Various members of the seventh generation have visited the house, slept, eaten, played, and celebrated there, but so far none has taken up residence.

5. My 1990 masters thesis was about a border dispute between Pennsylvania and Connecticut, 1750s-1780s. Wait, you say, Pennsylvania and Connecticut don't share a border! Well, they don't now, silly... but it took some bloody skirmishes and protracted legal wrangling to establish that for sure.

6. I got my first driver's license at age 25. Reluctantly. Still not a car person, even now that I live in Los Angeles.

8. I own and wear more than ten pairs of maryjanes, various colors and brands. Ridiculous, sure, but they suit my big Flintstone feet. (Image above is a turquoise-floral print maryjane from On Your Feet shoes. Might wear those today.)

See, I was clearly reaching towards the end there--just not that fascinated by my own random things, I guess. Now to tag forward: hm, I think I'll just link to some fairly recent adds in our blogroll or my feeds--if they're interested in playing fine, if not, that's cool too. Tagging: Cilla at My Big Noise, Shelob at Caution Blind Driver, Paula at E. is for Epilepsy, zombierubberduckie at Life Sat Down, Penelope at Rolling Around Life, Jodi at Reimer Reason, I'll add two more later, my laptop batteries are kaput for now...

Sunday, July 15, 2007

And, to be honest, has been up for a few days, but I'm back and able to make this belated announcement. Retired Waif has produced a perfect midsummer edition of the Disability Blog Carnival, inspired by beach-reading celebrity mag-hype, around the theme "The Disabled! We're just like YOU!!!!" (Yes, four exclamation points at the end.) Big entertainment, plenty of snark, but as always, a solid collection of great blogging. Take a lazy July afternoon to savor it, perhaps with a favorite beverage? (See, I've been in Sorrento, where everything is more fun with a cheerful bottle of limoncello nearby.)

I know I've said this before, but all the Disability Blog Carnival hosts to date have been wondrous, diverse, creative, thoughtful, reliable... couldn't be a carnival without these great volunteers taking turns. But I do believe this is the first edition known to be assembled by a woman experiencing contractions on the midway. All the best to the Retired Waif in her impending accouchement.

I've been traveling, without internet access--I'll resume blogging here shortly, especially since I've been tagged, and there's a new suspense-filled Disability Blog Carnival edition up at Retired Waif, but for now, an image from the Circumvesuviana train, taken between Naples and Sorrento last week....[Image description: close-up photo of a sign affixed to the wall above two train seats and a red railing, which reads "Riservato ai mutilati ed invalidi di guerra e del lavoro" in black capital letters. Rough translation: "Reserved for those mutilated or disabled in war or at work." Above the sign, there is a window, with some reflections noticeable, including my yellow blouse.]

Monday, July 02, 2007

I just finished reading Edith Wharton's The Fruit of the Tree, a 1907 novel about marriage and idealism and stepfamilies and workplace safety and assisted suicide. Yes, one hundred years ago, the central ethical and practical conflicts of a novel swirl around questions of pain management, prognosis, and patient consent.

The theme starts in the first conversation between main characters John Amherst, a mill operative, and Justine Brent, a nurse, about the condition of a mill hand about to lose his forearm after an accident on the job:

"And what will the company do for them when the wife is a hopeless invalid, and the husband a cripple?"

Amherst again uttered the dry laugh with which he had met her suggestion of an emergency hospital. "I know what I should do if I could get anywhere near Dillon--give him an overdose of morphine, and let the widow collect his life-insurance, and make a fresh start.[...] In your work, don't you ever feel tempted to set a poor devil free?"

She mused. "One might...but perhaps the professional instinct to save would always come first."

"To save what? When all the good of life is gone?"

"I daresay," she sighed, "poor Dillon would do it himself if he could--when he realizes that all the good is gone."

"Yes, but he can't do it himself; and it's the irony of such cases that his employers, after ruining his life, will do all they can to patch up the ruins."

Later in the novel, in a typical Wharton twist, Amherst's wife Bessy is paralyzed from the neck down in a riding accident, and Justine is her nurse. She consults a clergyman, a doctor, and a lawyer, all men, who all assure her that hastening Bessy's likely end would be wrong. Bessy's pleas, and the memory of that earlier conversation with Amherst, still convince Justine to administer the overdose of morphine. She never denies the act, but she doesn't tell Amherst or Bessy's family either. When they learn of it, she is effectively banished from the family. Far from approving assisted suicide for his own kind, Amherst is horrified by the fact--it's right for a mill hand who loses his arm, in his calculation, but not for a wealthy woman who becomes paralyzed.

There are a few elements of the story that are of their era: Bessy's pain cannot be managed effectively, and she has one of those plot-friendly injuries that are both immobilizing and intensely painful, and still allow her to speak. There are no surgical or therapeutic options for her, either, although her scientific young doctor is fascinated by the "case," and hopes that he can keep her alive for a long time, at all costs, just to prove his theories and prowess (the doctor is abusing morphine himself). There's no real medical "system" at work: the doctors and nurses who appear are all hired and paid by the patient's family directly, and visit the patient at home--no hospital, no insurance, no ethics committee in sight.

And most critically, Bessy's personal autonomy is disregarded, because she is a woman. She has a living father and husband, and their word carries more authority than her own in serious matters; her wealth also complicates the situation. Justine feels justified in obeying Bessy's desperate pleas, in part, by a New Woman's sense of female solidarity. As Donna Campbell writes in the introductory notes to the 2000 edition from Northeastern University Press,

Defined as a rich woman whom Amherst has never been able to wean from the position of social parasite, Bessy is already, according to the laws of class and consumption, a useless body. Thus Bessy's accident intensifies but does not fundamentally transform her status, a status that according to the laws of class validates the right of the rich to be useless....Justine exposes the unwritten explosive principle that science or its representatives may kill the useless body of the poor but not of the rich. [xxvi-xxvii]

The central section of the book, from the time of Bessy's accident to the moment of her death, is packed with discussions about bodies, and quality of life, and modern medical advances, and the responsibility of nurses and doctors. The plot was apparently inspired by Wharton's upset after a woman friend was paralyzed and died months after an accident, in pain similar to what she assigned to Bessy. This real-life counterpart is discussed at length in the big brand-new (2007) Wharton biography by Hermione Lee.

The last section of the book is aftermath--this isn't an assisted suicide tale where the death is the end of the story, a solution for all concerned. Instead, it's a moment that continues to haunt and twist and nearly destroy the survivors. It's not hard to see where Wharton's sympathies lie (Justine Brent is, after all, an almost too-perfect heroine), but she gives the subject a complex, unsettling treatment anyway. For that, the novel should be read and discussed. Even a hundred years later.